When families fail parents of children with special needs

Maureen used to be obsessed with baseball -- and then she had children. After she welcomed her son, Charlie, and his extra chromosome, she discovered her passion for writing about Down syndrome and disability-related issues.

Coping with isolation, hurtful remarks

Learning your child has been born with a birth defect, a disability or a life-threatening condition inevitably breaks a parent’s heart. But what happens when your own family — flesh and blood who have promised to love you no matter what — run in the opposite direction?

Parents of children with special needs share how they learned to cope, and experts share tips on how to move forward.

For many reasons, some family members may choose to withdraw from their relationship with a parent of a child with special needs or — probably worse — remain a part of their world but punctuate time together with crass, thoughtless and sometimes incredibly painful comments and questions.

"When will you put your son in a home?" one mother asks her daughter, who has a child with Down syndrome.

"Oh, look! He can feed himself! He is doing just wonderfully!" says a well-meaning relative to another mother of a child with Down syndrome.

Jane (not her real name) shares her first experience with pain, weeks after her son was born with Down syndrome. "[My mother] called… and shared with me that they had a program near her where he could learn to be a janitor. She was looking into these programs, she said, 'because I am learning to love [your son].'"

Origins of missteps

What prompts a family member to live on the horizon of a beautiful child's life? Dr. Kay Seligsohn is the staff psychologist for Massachusetts General Hospital's Down syndrome program. She has worked with families of children with special needs for more than 20 years, and shares some theories — and solutions.

She points to two big reasons family can be out of touch with what a parent needs — good intentions based on decades-old knowledge and, yes, sometimes simply the general inability to be compassionate.

Outdated information

"The field of pediatric psychology is really young," Dr. Seligsohn explains.

"If we as the professionals are just beginning to really understand the range of functioning in children with disabilities, you have to cut your family a break.

"[Family members are] often bringing outdated knowledge to their relationship with your child. It becomes the job of a parent of a child with Down syndrome to educate your family, friends and support system," she advises.

How to educate family

"The big message is that most people want to be helpful but they’re overwhelmed and don’t know how," Dr. Seligsohn emphasizes. "We all too often have expectations of our family that we never make explicit. The important piece is to be clear communicators."

Dr. Seligsohn recommends the following to help educate your family:

Provide resource materials. These may be books from your local support center's lending library (e.g., most Down syndrome associations have these) or, if your family member isn't an avid reader, videos can be helpful resources. Dr. Seligsohn advises finding books that cover a topic in general rather than personal accounts, which tend to focus on one child's conditions instead of the range of possibilities.

Be direct. "People need permission to be direct and upfront… to say, 'Can we have a conversation about the types of help that would be useful?'" Dr. Seligsohn says.

Preparing for painful comments

Dr. Seligsohn points out families of children with special needs often encounter similar painful comments "packaged in different forms." She advises leveraging the years when comments from family, friends or strangers are beyond your child's comprehension. "You have the luxury of using the younger years as practice time," she says.

Think before you reply

Rarely is one prepared for a painful or rude question or comment, although we likely spend weeks if not months afterward rehashing what we wish we'd said — and coming up with stellar responses.

Indeed, questions will catch parents off guard, so it's important to think about how you’d like to respond. SheKnows asked Dr. Seligsohn to address a common question that can be painful to answer: "Doesn’t medication exist to manage your child’s condition?"

Dr. Seligsohn says to ask yourself two questions before answering a painful question:

Do I dignify this question with a response? "If it's a grocery clerk, they don’t have any right to know anything about [your] child," Dr. Seligsohn says.

Do I want to answer this question now? Your child may be with you, or you may want to address the question in depth and not have the time.

Choosing not to answer

If you decide you do not want to answer the question, Dr. Seligsohn suggests two types of replies, both intended to help the questioner realize he or she has asked an intrusive, inappropriate question:

"Do you typically ask people what types of medication they use?"

"That’s a very interesting question to ask a customer."

When you need to reply

Sometimes, the person asking the question has a need to know and understand the answer, for example a teacher at your child's school. If the timing isn't right, "Have a two-line response [ready] that educates the person and helps them understand," Dr. Seligsohn offers.

If a thorough response will take more time or you prefer to answer without your child present, Dr. Seligsohn suggests a simple reply of, "I really want to answer that question, but it’s a long answer. Can we talk about this sometime in the future?" Then, be sure to loop back at a more convenient time.

Unyielding relatives

Sometimes, family members "simply are unyielding in their expectation," Dr. Seligsohn explains. "There are times when certain family members don’t really get the privilege of knowing your child, [and] there are certain family members who can’t tolerate differences."

For example, a family member may expect a 4 year old to act a certain way, but perhaps your 4 year old is not at the same level. In that case, Dr. Seligsohn recommends a direct approach: "My 4 year old is really more like a 2 year old, so I think if you think of him that way, you’ll do fine."

Sometimes, family members go too far. Ann (not her real name) has a daughter with Down syndrome and recounts hearing her father-in-law make fun of children with special needs. "I could not believe what I was hearing... [I thought], that could be your granddaughter that you're making fun of right now! I lost more respect for him that day and will never leave her with just him."

When everything seems fine

Often, families "see [our child] as this cute little girl who is doing so amazingly well, so why would I need any additional help?" explains Christi, whose daughter has Down syndrome. "[The perception they give is that my daughter] looks great to them, so we must have it all under control.

"They do not see all the work, the therapy visits, the doctor visits, the specialists, the research, the cost, the [evaluations], [Individualized Education Plan] meetings, the emotional drain it takes to produce this 'cute little girl.'"

Another mother, who asked not to be named, shares, "Sometimes I think they just really don’t care to know the truth, or they don’t hear me complaining, so they think everything must be fine and stop asking."

"Family members often believe they are being supportive when they minimize parents’ concerns about their children," she explains. "However, parents often feel that their concerns have been discounted by their family members which can lead to feelings of isolation and even abandonment as they cope with the diagnosis."

Dr. Keefer offers tips for moving forward:

"Try a comment that does not put the other person on the defensive such as, 'I understand that you are trying to reassure me when you say that you do not see my child's difficulties. However, what I really need is someone to just listen to my concerns and feelings."

Invite key family members to therapy and evaluation appointments. "Sometimes hearing the diagnosis and the child's areas of difficulty from a professional can legitimatize the disorder," Dr. Keefer points out.

Understand that acceptance of this diagnosis often takes time. "Be willing to give family members time to process this information and cope with their own feelings about the diagnosis," she says.

Misunderstanding features of an ASD

"Sometimes the features of an Autism Spectrum Disorder (ASD) can be subtle and are difficult to recognize during brief interactions such as occasional family gatherings," Dr. Keefer points out. "[Those features] also often appear similar to difficulties attributed to other issues such as shyness, hyperactivity, social immaturity, temperament, and language difficulties. So it can be difficult for family members to recognize when an ASD is present."

Can friends replace family?

When family is more hurtful than helpful, friends may not necessarily take their place but certainly can help fill a void, especially friends who are going through similar parenting experiences.

"Friends of children with Ds are so important because they know that when I throw up my hands, curse and scream, 'uncle!' that it doesn't mean I want [or] need pity," Jenn shares. "They know it doesn't mean I don't love my kid just the way he is. They know I just need to scream to be able to go on."

When reassurances fall flat

"At least for me, [my] family people are always telling me it will get better [and] it will be OK,” Jenn explains. “[My family thinks] I need soothing. My Down syndrome 'family' hands me a glass of wine and says, '[Whatever you're going through] sucks.'"

Christi points out friends without a child with special needs can be just as supportive, too.

"My friends have become my family," she shares. "The friends who ask about her therapy, spend extra time with her and show a true interest in her."

Cammie shares her approach: "I have realized I cannot count on people all the time, but I can count on the Lord."